www.uwindsor.ca/autism

1
www.uwindsor.ca/autism
mgragg_at_uwindsor.ca
Navigating the Autism Diagnostic System Parents
Experiences in Ontario Alison A. Spadafora,
Marcia N. Gragg, and Sylvia L. Voelker Department
of Psychology, University of Windsor, Windsor,
ON, Canada N9C 3P4

• children with ASD were diagnosed at significantly
  younger ages over time (date of birth year of
  diagnosis, r -.39, plt.01)

• Introduction
• Early diagnosis of Autism Spectrum Disorders is
  crucial, as intervention is more effective at
  early ages (Harris Handleman, 2000).
• Parents are often concerned long before their
  children are diagnosed (Baghdado, Picot, Pascal,
  Pry Aussilloux, 2003 De Giacomo Fombonne,
  1998 Howlin Moore, 1997).
• Parents experiences in attempting to obtain a
  diagnosis for their child need to be heard.

• Results
• the biological mother was the first to be
  concerned for 75 of the children
• average age of child at first concern was 19.7
  months (1 - 84 months)

• Objectives
• To identify
• early symptoms recognized by parents
• parents help-seeking behaviours
• professionals reactions to parents concerns
• parents ideas to improve the diagnostic system

• 35 parents reported 48 barriers to help-seeking

• 10.4 months elapsed on average before a first
  appointment with a health care practitioner
• during the delay, 43.9 of parents made an
  appointment with a health care practitioner,
  19.5 asked friends or family for advice, and
  16.3 looked for information in books, magazine
  and the Internet

• Method
• Participants
• 79 parents
• 95 mothers
• average age 39.9 years (28 - 58 years)
• 91 Caucasian
• 81 born in Canada
• 86 married
• 86 had some college/university or more
• high SES (Hollingshead score 41.510.91)
• 81 children
• 70 males, 11 females
• mean birth year was 1995 (1984 - 2001)
• median year of diagnosis was 2000
• 95 born in Canada
• 52 diagnosed with Autistic Disorder

• 63 parents reported 133 factors which facilitated
  help-seeking

• 44 parents provided 96 ideas 79 of which were
  classified into 7 themes

• age at diagnosis ranged from 18 mo. to 180 mo.
  (15 years)
• children with Aspergers were significantly older
  than children with Autistic Disorder at diagnosis
  (plt.01)

• Conclusions
• Ontario results are similar to those from other
  areas of the world
• early symptoms of ASD tend to be identified by
  parents
• parents were often told not to worry, or their
  child was referred
• long wait lists lack of coordination impedes
  early diagnosis
• ASD was often diagnosed too late for effective
  early intervention
• most parents were not satisfied with ASD
  diagnostic system

• Acknowledgements
• parents who shared their experiences with us
• 13 Autism Society of Ontario chapters
• The Summit Centre for Preschool Children with
  Autism
• High Functioning Autism/Aspergers Parent group,
  Windsor
• Ontario Adult Autism Research and Support Network
• SSHRC for funding this research